Monday, February 11, 2013

Scrutiny

On Facebook someone posted a picture of a young couple with Down Syndrome on their wedding day. I posted a brief comment saying, "Wonderful."

That's it.

Well, I got a really nasty message saying that as a 'disability leader,' I should know better than to fall prey to inspirational porn. The writer was more long winded than that, let's just say it was a blistering attack on my integrity as a person and my role as a 'disability leader.' I was quite stung by the whole thing. I'm used to this blog community where people debate and disagree but seldom personally attack one another. I guess I got a bit spoiled. Before I show you how I responded, let me address this 'disability leader' thing.

I have never claimed to speak for the disability community, I am only one voice. I have only lived with my disability for a bit over five years and would never dare presume to have the depth of knowledge and understanding of those who have a lifetime of experience. If I am guilty of anything, in that regard, it's using the voice that I have and fighting the battles that I face. I know that many of my opinions aren't shared by others in the disability community or in the community of service providers - but they are still my ideas and I have a right to have them and to express them. As myself, not as a 'leader.'

I responded by placing this comment under my previous 'wonderful' comment:

I just received a private note, quite nasty, asking what I meant by my comment 'wonderful' here on this picture. I was surprised because I thought 'wonderful' meant 'wonderful.' However, let me be clear I think it's wonderful because I like seeing pictures of people in love, people getting happily married. I don't think it's 'wonderful' because they have Down Syndrome and are getting married. Part of my 'wonderful' IS however, related to the fact they have Down Syndrome. Let me explain: A time, not long ago, people with intellectual disabilities of any type, would have been forbidden to even date someone. They were separated by gender, they were punished for relationships. Here in Canada (warning ... stop reading if you are uncomfortable with violent imagery) a doctor, working in an institution, castrated men with Down Syndrome and sold their testicles for scientific research, women with intellectual disabilities were sterilised against their will. We have been brutal regarding love and sexuality, BRUTAL. I say 'wonderful' in the most heartfelt way because BECAUSE ... it wasn't long ago that this would not have happened, would not have been celebrated, would have caused outrageous controversy. So, when I said 'wonderful' I meant exactly what I said, 'wonderful.'

What I didn't say, because it wasn't germane to the subject at hand, was how that attack made me feel. Further, I didn't say that my immediate reaction was 'hold on ... you a-hole ... couldn't you ask me what I meant before you told me what I meant.' Years ago I worked with a young woman who said, 'The thing about cerebral palsy is that you never get to finish your ...' And she was right. I watched over and over again as she was in conversation with others that people would get impatient with the pace of her speech and just jump in and finish her thought for her. It drove her bananas. What really pissed her off though was when others with cerebral palsy did it to her ... she felt that they should know better.

And I guess that's how I felt. Those of us in the disability community know what it's like to have others, without disabilities, tell us how we experience our lives and our world. We resent that they don't ask. Resent it. 

So, we should know better and do better.

Don't you think.

22 comments:

Anonymous said...

Honestly Dave - you seem "damned if you do, damned if you don't" sometimes. Good golly miss molly. What is wrong with people? At the very least, as you say, you have a right to your opinion. And you are very respectful of the opinions of others - as demonstrated on your blog. Facebook, yet another avenue for a-holes.

Jayne Wales said...

Testing

Jayne Wales said...

Sorry about that testing. I have been having problems as you can see with my Google account.

When people celebrate they put up a photo of themselves doing something happy usually. Facebook is full of that and you have to be a bit discerning not to respond to everything. However to put wonderful on a wedding photo is lovely. However if you feel that it is wrong then point it out politely, no need to get uptight there are far worse things in life than that photo and comment. Just say why you don't like it. Remember though it is someone's wedding photo and don't spoil the moment of someone sharing their gladness, especially when that gladness has been fought hard for.

Valerie said...

I cherished the FB picture of the newlywed couple with Down Syndrome, because this is what I aspire for my 4 year old son, Bobby. Shame on people that would judge you for celebrating with this couple. Everyone, of every ability, deserves to find love and happiness. <3

Dave Hingsburger said...

Valerie, Jayne and Anon, Thanks for your comments, the woman who chastized me for my 'wonderful' comment thought that the picture was being used as inspirporn and thought that I had bought into that. I wonder if we can celebrate ANYTHING without being accused of misusing the celebration. There is a place for joy and happiness and it shouldn't always be under such intense scrutiny.

Belinda said...

Dave, how tiresome it would be to have to second guess everything you say or do because you are, not a person with opinions, but a "disability leader" 24 hours a day, 7 days a week. The weight of that would be quite unbearable, I should think! And you could never win anyway, if you took that guilt trip on, as the first Anonymous said.

coffeetalk said...

I don't understand the Inspirational porn notion. Couldn't any picture of a young couple on their wedding day be interpreted as such? People do not realize that there are more similarities between people than differences. I actually don't understand how people think they are entitled to be so outraged about another person's life. That in itself is an intrusion. I'm sorry that this intrusion became a personal attack on you.

Dave Hingsburger said...

coffetalk, many people with disabilities (and I find myself amongst them more and more often) tire of being 'inspirational' for simply doing ordinary things. I have been told I'm inspirational while shopping, while going to a movie ... it isn't inspirational, it's just every day life. It speaks to an attitude or a preconception that disability is so far from the norm that the norm is an amazing acheivement.

Dave Hingsburger said...

Belinda, I do find myself 'second guessing' but not what I say but how I say it. I think that writing a blog or having a podium from which to speaks brings that kind of responsibility. For example, in this post, I was writing the sentence which became "It drove her bananas." It started out, forgive me, "It drove her crazy." Then I realized that I didn't need to use that word. So I thought and changed it. I like this kind of second guessing, it makes me, I hope, more accessible to readers. I don't like the other kind of second guessing - and try not to do it, if I think something, I think it and shouldn't be afraid to say it. I've often had opinions that were considered outrageous - like people with disabilities should be allowed adult lives - and now they aren't so outrageous.

Louna said...

As you just said, inspirational porn is when people are described as inspirations for doing ordinary, everyday things... I didn't know marrying is an everyday experience! So yes, I believe many weddings are wonderful, and some wedding celebrations (though perhaps not just a photo) can even be inspirational. Of course, all of this is unrelated to the disability status of the people being married.

Susan said...

I think.

Belinda said...

Dave,the kind of second guessing you described is being responsible, thoughtful and considerate of the impact of your words. I agree wholeheartedly.

Jeannine said...

I understand the aversion to "inspiration porn" for things that are done by people every day. But this is not something that is done every day! Sure it is done by non disabled people on a daily basis, but this is historically not something that has be "allowed" to people with a disablity such as Down Syndrome. I think we need to celebrate and take note when people make strides forward. Their disablitity exists and they did something not typically done. Let's not ignore that and pretend we don't notce. That, to me is offensive.

Tamara said...

People can get nasty on Facebook. I'm guessing that might not be the last private message you see that's rude. I do think you are in the disability leadership category, though. The problem with the message sender is that he/she doesn't understand that that doesn't mean you speak "for" anyone. You speak, you provoke thought, you prod the world to move forward a bit. It is moving forward, and I think you are a part of that.

I do have to confess, though - that if it's the picture I think it is, when I saw it for the upteenth time the other day, knowing you are now on Facebook, I did wonder if you would call it inspiraporn.

I believe the picture is of a couple who married in 2007 and has been divorced for quite awhile. I'm not sure how long the marriage lasted. Because there have been a few marriages of people with DS that are so hyped up in the community, then quietly end in divorce, I've become a little jaded.

I don't think it really is in the inspiraporn category, but I do think it is a bit disturbing when someone's wedding picture from over five years ago keeps getting posted on Facebook over and over and over again as an example of a great achievement. This is at least the second wedding between two people with Down syndrome that's been publicized about as much as celebrity weddings - but when the marriages end, it's very private.

And let me be clear, I am not saying the divorce shouldn't be private. But, as a mother with a son with Down syndrome, it really does make me wonder about the difficulties that we should expect should he decide he wants to marry.

I'm at the point now where I will say "wonderful" when I hear about a couple with Down syndrome celebrating their tenth wedding anniversary!

Dave Hingsburger said...

I confess that it was just a picture, there wasn't, as I recall, a story attached to it. Even it it ended in divorce, though, that moment is still wonderful. I'm jaded about any marriage, though, as many seem to end in divorce or long quiet suffering. But, as I said, I responded to the feeling of the moment - lovely and the realization of the moment - change happens and both of those are wonderful.

Colleen said...

Dear Dave:

If that is "inspiriporn" then I am guilty too.

Marriage was not an option for my brother. No consensual sexual relationship was an option - he lived in institutions. I believe that his only experience of sexuality was rape and sexual assault and he had the scars to prove it. I don't think he ever knew the loving touch of an intimate partner and that breaks my heart. So, if I saw a photo of a man with Down Syndrome on his wedding day you can bet I would be saying wonderful too! And if that is inspiriporn then bring it on!

I agree with what Belinda says about being a "disability leader" - tiresome and restricting in the extreme. I like it better that you are just Dave, the human being.

Colleen

Louise said...

Re 'tired of being inspirational doing ordinary things' - or even just for existing. My foster son, then aged ten, and cute, blond-haired and blue-eyed and very severely disabled was approached by a woman who said 'I can see the Holy Trinity shining out of your eyes'. To which he replied, in the very rudest word he knew: 'Knickers!'.
He's now in his forties and that spirit has stood him in good stead all his life.

Anonymous said...

Dear Dave,

after reading about the comment of you "wonderful" I was angry at first about the "inspirporn" comment in two ways. Maybe for language reasons I understood at first by inspirporn that the commentor meant to complain about people with disability being in love and having a sexual relationship and then I understood, that she was mocking the idea of finding it good to encourage people to see how happy people with down syndrom or disabled people can live.

Then I had to laugh at all that. Because this is real inclusion. Seeing every varity of people participate in average life activity loving, marrying, blogging...

That is real inclusion, and mocking about it is so far from anything, that the point is totally lost on the commentor.

I hope that you can catch my point there and why it made me laughing :-)

Julia

Jen Logan said...

Ack. I hate it when a community eats itself.

It is wonderful when any couple gets married or achieves any other major life event. I would have said the same and then (gasp!) shared it far and wide so that others may see how wonderful it is. Call it whatever you want, I call it "raising awareness". There's still a lot of people out there that don't quite see people with DS as people, with needs and wants and desires.

stemcollege said...


You can only be true to your own ideas, thoughts and motivations. It is too bad that some people insist on being so quick to share their negative energy :/

Mike said...

Baffling . . . kudos for putting yourself out there. This is actually the first blog that I've followed (I know, I'm a dinosaur, but I'm actually younger than Dave, I think) and I can't imagine doing Facebook. Still thinking about what you said about the fellow with the walker, putting it out there for others to see (at least this is one interpretation, as pointed out by others). I think this is about scrutinizing our default-positions on things like that. Might we be wrong about our interpretations on any single occasion? Absolutely. But maybe it's about erring on the right side and choosing the kind of mistakes we wish to make. If we view behavior as a form of communication and think about others as being human like ourselves, then maybe we can avoid dehumanizing others. I would rather misinterpret any given behavior and run the risk of attributing an intention to it that didn't exist, than simply set my default setting on "blind" and miss all instances.

Ettina said...

"I understand the aversion to "inspiration porn" for things that are done by people every day. But this is not something that is done every day!"

Exactly. If I saw a nondisabled couple getting married, I'd congratulate them too. Why not a disabled couple?